I am not a medical expert.
I am not a medication expert.
I know nearly nothing about drugs.
I have never met a pill I wanted to take.
Is that blatant enough about my ignorance so my next thoughts are taken with a grain of salt? Nay, not a mere grain. It would be better to imagine an overflowing wheelbarrow of Morton’s when-it-rains-it-pours overpriced sodium!
Since I’ve confirmed my lack of qualifications, let me share a few biased opinions about . . .
Ever heard of it?
In the hospice meetings where medications are discussed, Haldol often appears on the list of drugs for the comfort and care of patients. When noticing it, I thought of my father. And I also thought about families I’ve worked with or heard about over the years that question any drug taken by a loved one. Haldol prompts many of those questions, both the curious and concerned ones.
Developed in the 1950s, and in regular use since the 1960s, Haldol is the shortened version of Haloperidol. According to webmd.com:
Haloperidol is used to treat certain mental/mood disorders (e.g., schizophrenia, schizoaffective disorders). This medicine helps you to think more clearly, feel less nervous, and take part in everyday life. It can also help prevent suicide in people who are likely to harm themselves. It also reduces aggression and the desire to hurt others. It can decrease negative thoughts and hallucinations.
There are many sites like webmd with an unadorned clinical description of Haldol. There are also many cautionary articles about Haldol, where it’s blamed for misery, mistreatment, or even death. Since Haldol has been given to those with Tourette syndrome, a web hunter-gatherer may stumble across references to a 1990 episode of L.A. Law. Jonathon Rollins (actor Blair Underwood) defended a client with Tourette’s. That show was one of the first times that syndrome entered the national conversation. I don’t think “L.A. Law” mentioned Haldol, but any search for the treatment of Tourette, with or without the handsome Rollins defending a client, will include Haldol.
Like morphine, Haldol can scare* people. We don’t want loved ones in pain, but if morphine is mentioned as an option for the physical anguish patients frequently experience, some immediately resist. What if a dying spouse or parent becomes dependent on morphine? What if it hastens death? What if the pain is reduced, but a patient can no longer communicate?
We don’t want loved ones to have “negative thoughts and hallucinations,” but if Haldol is mentioned as an option for the troubling delusions and negative feelings patients can experience, some hesitate or debate or both. As with morphine, the Haldol what-ifs of dependency, side effects, or over-sedation worry caregivers.
In his early nineties and in the later stages of dementia, my father (who died in 2012) had hallucinations. Once, while visiting my parents, Dad became convinced an injured woman was yelling in the backyard. On his wobbly legs, the man who taught me how to throw a baseball and parallel park struggled down the hallway to my room, urging me to help him save the woman. It was raining, near midnight, and there was no movement outside other than branches swaying in the wind. Dad was convinced we must rescue her. Now! I coaxed him back to bed. Thirty minutes later, after hearing movement from his room, I checked on him. He was outside, braced against his walker, on the verge of crossing the rain slick lawn to respond to the imagined screams for help that only he could hear.
He got worse after that night. Delusions. Agitation. Anger. Dementia was never kind to my father.
He would eventually take Haldol. I hated that it flowed through his veins, but was grateful the necessary drug reduced some of his worst symptoms. As his loving son—with memories of backyard catch and family road trips—the conflicting feelings of “hate” and “gratitude” never fully reduced my guilt.
Is Haldol a wonder drug? Well, we may wonder what bad things might happen when it’s used. We wonder if we’re doing the right thing when giving permission for its use. We wonder if the one we love will ever be the same again.
Because it’s easy-peasy to find grim tales on the web, Haldol is accused of being abused in hospitals, at skilled nursing facilities, and by hospice personnel. The dreaded—and sometimes necessary—medications that may help a dying person find relief from pain or agitation, from delusions or aggression, rightly make everyone nervous. But the right dosage in the right circumstance, given by a caring and conscientious medical staff, can provide relief.
If you, as a hospice patient or caregiver, don’t want a drug used, you can say no. In Medicare’s patient’s rights statements, you can “refuse care or treatment.” While Haldol may be perceived as the best response for the patient, all of the kind and compassionate hospice nurses and doctors I have known will seek an alternative if that’s what a family requests.
Truly, it is your right to say, “No.”
But equally truly, there may come a time—a time no one wants and no one is ever prepared for—to listen to the options available for the care and comfort of a patient.
How I wish Dad had never taken Haldol. But in the narrowing, terrible choices available as his dementia worsened, and as his dying loomed, it was one of many treatments that brought a little comfort, and a little calm, in the fierce storm of his final years.
(Hospice vigorously protects a patient’s privacy. I’ll take care with how I share my experiences. Any names used are fictitious. Events are combined and/or summarized.)
*I debated which word to use to describe reactions: scare, unsettle, bother, anger, confuse? All of those and more can be responses to Haldol and other “serious” drugs. Your scared (or unsettled or bothered . . .) reactions may increase in anguish unless you share openly and with an open mind to the medical staff helping you.by